Day +13 dawning! Everything is fine…no more mucositis in my oesophagus so I can drink and eat (not that I really want food). Neutrophils hit 1.2 yesterday after 2 Neupogen shots, so I am no longer neutropenic nor in isolation; still an occasional vomit but diarrhoea has cleared. Luckily I have had no infections, although an anticipated temperature spike last Friday prompted 3 days of IV antibiotics which they have now stopped. Preparations are being made for me to go home ..probably Thursday which will be day +15. The consultant wants to be sure my neutrophils don’t drop too far now the Neupogen shots are finished, platelets till a tad low, Hickman line needs to be ripped out..probably Wednesday and I am done and dusted! Very fatigued though…mind you it is 3:15am while I type this! Be prepared for lots of products being dripped into your line…I have had to have 4 bags of blood, 2 of platelets, immunoglobin, saline (lots) and last night potassium and magnesium. But the SCT according to my experience at least is easily doable. I have a philosophy of life “First dream it, then do it!” You must go in truly believing that it will work and you will have an easy ride. Well it worked for me!
“A life lived in fear is a life half lived.”
Carol
Hi Liz and Kev
Well it is day +11 after transplant and I have had my 2nd growth hormone injection to shock my cheeky but shy new stem cells into action. Every day brings improvement now. I had a few rough days especially due to mucositis in my oesophagus….terribly painful but after all the ice debate I had no mouth sores so I believe the ice works….just a shame I couldn’t get it down into my oesophagus…OUCH! I am still unable to eat much, but today I can swallow water at least. I have had diarrhoea which is also expected but that is also improving. I have had a few bouts of vomiting and dry retching but nothing too disturbing but throughout it all have managed to do everything I needed to care for myself. My husband visits every 3 or 4 days but that is only because I asked him not to come as I kept falling asleep while chatting with him. How embarrassing after he has made the effort to get here! Really the staff has been amazing…the haemotology ward (Dacie Ward) at Hammersmith Hospital has an A star rating from me, so there is not much my husband could do except take home my washing. Well it is past my afternoon nap time so I must sleep……3 hours of an afternoon is not unusual for me nowadays…..FATIGUE!
Carol
Hi John
I completed CTD at end of October with high dose chemo for collection on 11 December and collection 23 December. Transplant was 22 January. But there was a delay in the transplant referral as the consultant was on holiday for 3 weeks and then of course Xmas intervened. I think it depends a lot on the availability of beds at your local facility. I am still in hospital but have been independent from day 1. Even on the rough days I was still able to care for myself and food wasn’t an issue as I have barely eaten for a week anyway.
Today is day +11 and unless something drastic happens to alter things I expect to be completely independent when I return home. I will appreciate having my husband drive me to appointments as London drivers do my head in and he is always good at gently reminding me to eat, even when I do not want to. I am sure though that fatigue will be my greatest enemy as here at the hospital I am falling asleep regularly. I am sure I wouldn’t be able to care for anyone else when I get out, so I suggest you have a house cleaner in place (which I have organised just for 3 hours a week) and/or someone to look after your wife. If you do not have major complications, I think you will be able to care for yourself….allowing 3 to 4 hours per day for extra naps!
Carol
Bless you Eve, I do hope things work out but do go to seek that second opinion. I have read some miraculous stories on the Facebook Myeloma Support Group page from people who have had a second opinion, received new treatments and continue to thrive. Don’t give up hope!
Carol
Hi I read all of the research, but remain unconvinced about the curative properties of these.
Carol
I am 64 and in hospital at day 10 after stem cell transplant. I chose SCT as I hope to have some years of drug free remission, but it is a gamble…little is predictable in myeloma world.
After I completed 6 cycles of CDT successfully, it was only 3 weeks later that my paraprotein returned. If I didn’t do SCT I would have been moved straight into Velcade…so more drugs which really destroy my quality of life.
Carol
Hi David
How fabulous for you…I am so pleased…well done!
Carol
Thanks Tony….you give me hope! Today is day +10 after SCT and I am improving day by day. Today I received the first of 3 growth hormone injections that should kick start my stem cells. I am soooooo looking forward to a period off drugs. My goodness have they pumped me full of them these last few weeks? Of course you expect the melphalan (high dose chemo) but hen they add in anti-nausea, anti fungal, anti viral, antibiotic(3 different types through the drip around day 8) plus the other supportive measures….8 hour saline drips, red cells, platelets, immunoglobin, loperamide for diarrhoea and oral morphine for pain….the list is endless! Thus far I have had few side effects really…vomited a few times, about 5 days of diarrohea (ongoing) and very painful mucositis in my oesophagus…..this is the most trouble as I have been unable to eat or drink for 4 days. The pain is slightly better today and I have given up my hatred of pain killers and received oral morphine today….another awaits me now!
So far no-one has discussed baby immunisations…are they really necessary? I have been very wary of immunisations since my eldest developed Guillaine Barre Syndrome as a result of the measles mumps vaccine….very worrying.
Hi John
You are on the standard NHS pathway as you weren’t randomised to receive Velcade through the trial. That pathway is CTD, which if successful puts you into the SCT line. Now I don’t know what happens if you refuse or delay the SCT, as I have elected to go straight to transplant and am now in Hammersmith Hospital London, 9 days post transplant. Tomorrow they will start the 3 days of Neupogen injections that should kick start my new stem cells into action….at least that is the plan!
I decided to go straight to SCT as I see it-yes as a gamble, but also a chance maybe to be drug free for some time. Let’s hope I get many years’ remission from the transplant. I also want to retire and go home to my family in Australia.
Carol
Hi Jean
Still suffering through the side effects but they are manageable. Oesophagus slightly less painful today and I managed to eat ice cream his morning…first solids for 3 days! Seem to have conquered the diarrhoea finally with loperamide and dry retching is minimal. I have had 16 hours of saline IV and the threat of the antibiotic tsunami is still hovering over my head! Temp 37.8 this morning …they will act when it hits 38! Too close for comfort!
Carol
Hi jean
I have just had an ultrasound and they tell me I have nodules on my thyroid and will refer me after SCT recovery….day +8 today and I am feeling rough! But I do wonder if the radiotherapy (10 sessions) I received for the centre of collarbone lesion may have started changes in the thyroid.
Carol
Well I have reached day+5 after transplant and am officially neutropenic. Have had a little nausea, burning oesophagus, now some difficulty swallowing, no appetite whatsoever and diarrhoea, but all in all this has been manageable. Now I am neutropenic I am told to expect the temperature spike, which unfortunately will be followed by a tsunami of 3 different antibiotics dripped into my veins for 5 to 7 days. Not looking forward to that!
No mouth ulcers yet, so maybe the ice lollies do work!
Carol
Thanks everyone
Well I did the ice thing and have no mouth sores yet, but I am only up to day 2 since transplant, so not out of the woods yet.
Mandy.I am so scared that I will go through ths transplant and then only get a short remission…. 7 weeks – that is worrying! It is such a gamble but I felt I had to take the chance.
Carol
Thanks Liz….had a bad day yesterday with a bit of vomiting, but today seem better better after they hit me with an extra anti nausea shot! Am only 2 days post transplant so they keep telling me to expect worse things to happen…like temperature signalling an infection, mouth sores and diarrhoea but so far none of this has eventuated. I had to have my first ever blood transfusion yesterday…..scary -also intravenous immunoglobin and IV calcium, so it seemed that all day something was being dripped into my veins. Today nothing yet but probably just because blood tests from this morning aren’t back. Keeping my fingers crossed for a better day today, before the immunity crash expected tomorrow or Sunday.
Carol
I agree that the NHS treatment is very regimented with no individualisation as in America. I do not even know if cytogenetics (FISH test) have been conducted in my case so am I low or high risk? Nobody has told me. It seems that unless you chase up a trial, everyone gets CTD…which I do not see used for first line treatment in America. Even in Australia where there are so few patients, Velcade is in the initial treatment. Here with the NHS it seems to me that to get Velcade you must take and fail 6 cycles of CTD. Then there’s the delayed transplant dilemma. I am in hospital now having received my stem cells back 2 days ago, but have I chosen the best path for my myeloma? Honestly I do not know! I believe that Dusk has made some valid points in his post.
Having said all of that, I am grateful for the treatment I have received here in London, especially when I see the extreme difficulty some Americans have in raising funds for their treatment when they have no medical insurance. The NHS, whatever its faults, is truly an amazing service.
Carol
